Diagnosed in utero with a hybrid CPAM/BPS lesion, baby JJ faced a complicated start to life. His mother shares their powerful journey through uncertainty, a NICU stay, successful surgery, and the gratitude and wonder she feels watching her little boy thrive today.
***JJ is a pseudonym***

Pregnancy after multiple losses

In August 2022, I saw two lines on a pregnancy test. For most women, that brings joy and excitement. But this was my fourth pregnancy, and after knowing only loss, fear quickly took over.

There’s a unique kind of pain in preparing a space in your heart for a child who never arrives. When someone dies, there are rituals—flowers, cards, a funeral—ways to grieve. But there’s no guide for pregnancy loss. People rarely talk about it. My grief was silent, and that silence made it even harder. I don’t think I’ll ever be completely over it; I’ll always carry those quiet “what ifs.”

After reaching 12 weeks, hearing the heartbeat, and seeing my baby on the ultrasound, sharing the news with family and my stepson, this was all becoming real. Around 15 or 16 weeks, I finally began to hope. But just a couple of weeks later, at the anatomy scan, I knew something was wrong when the nurse wouldn’t let me take a picture of the ultrasound. Then she left, telling me to “hang tight.” I texted my husband to say I was getting really nervous.

A few minutes later, several doctors came in with a box of tissues. They had found something on the scan. My mind went straight back to all my previous losses.

The diagnosis

The scan showed a mass on our baby’s left lung. They said it looked like a CPAM with a starting CVR of 0.27. When we came back two weeks later, it had increased to 0.41, eventually growing to 0.91. After one of the local MFM doctors started to prepare us for scenarios that sounded terrifying such as fetal surgery, EXIT procedure, maybe prenatal steroids, we wanted to get a second opinion. We decided to consult with CHOP (Children’s Hospital of Philadelphia), which is about 4 hours away from our home. At CHOP we received wonderful education and they supported my decision to transfer care to Johns Hopkins.

The surgeon we spoke with, Dr. Shaun Kunisaki, is an expert in congenital lung malformations and has published many articles on CLMs. We felt very comfortable with the level of care at Johns Hopkins. After more scans, we learned that the mass was in fact a hybrid lesion: a mix of CPAM and BPS. We had regular ultrasounds to check the lesion and see if there were any signs of hydrops. There was some mass effect on JJ’s heart early on, which was worrying, but the fetal echo showed no impact on how it was functioning.

Every appointment felt like a roller coaster. I held my breath waiting for measurements, staring at the white triangle on the screen that represented the lesion. Finally, the CVR stopped rising at 0.91, and we were told it should now start decreasing as the pregnancy progressed. By around 30 weeks, the borders of the lesion were no longer visible on ultrasound, and around 32 weeks, his heart was no longer compressed; it had shifted back into place.

Pregnancy complications and the birth

Then came a new challenge. Around 33 weeks, I developed high blood pressure and headaches. I was sent to labor and delivery several times. Because of clotting factors, I had to start blood thinners. By 36 weeks, my blood pressure was getting even higher, my feet were swollen, my heart rate was elevated, and I had a strange pressure under my right rib.

These were worrying signs that preeclampsia was developing. Our medical team were concerned and prepared us for delivery. I’ll never forget the MFM doctors saying that we had “everything to lose and nothing to gain” unless we had the baby now. They walked me to labor and delivery where I started the induction process. After more than 22 hours of labor, our sweet baby boy was born happy and healthy.

The NICU team was ready in the room. They let me hold him for a few seconds while they delayed clamping the cord and then they took him to the side of the room because he wasn’t crying. I remember watching everyone’s reflections in the overhead light, asking my husband why our baby was so quiet. After almost two minutes, he cried for the first time.

A sudden stay in the NICU

We had prepared ourselves for complications. We had consulted with the surgeons, NICU team, and the transport team early in the pregnancy. When he was placed in my arms, and I got to keep him with me—no NICU time—I was overjoyed. My husband called him “Squeaks” because he was making these funny little noises. When we asked a nurse if the sounds were normal, she brushed us off and said he was just dreaming. But a couple of hours later, something still felt off. There was what looked like bruising on his face and he wasn’t doing much, even when I tried to nurse him. Another nurse took one look at him and suddenly JJ was taken from my arms and rushed to the NICU.

My world stopped. Nothing can prepare you for the experience of seeing your newborn baby hooked up to wires and monitors, surrounded by machines, doctors, and nurses, and to not be allowed to hold or feed him. You learn to read every number, interpret every sound. You ask permission to touch your own baby. Wearing a badge that says “visitor” while your newborn baby lies in a room changes you forever. Leaving the hospital without him was the hardest thing I’ve ever done.

I felt crushed with guilt. I felt that I should have realized sooner that something was wrong. It wasn’t bruising on his face, our son had been turning blue.

The NICU nurses were incredible. They made a banner with his name, a canvas of his footprints, and even a handmade hat and blanket. Their kindness brought comfort to the hardest days, and I still keep in touch with one of them today.

JJ was diagnosed with persistent pulmonary hypertension of the newborn (PPHN). After the first night with non-invasive breathing support, his oxygen levels were still unstable, and he developed severe jaundice. He struggled to feed, my milk was slow coming in, and a feeding tube was the next option. That night, I woke up panicked because he wasn’t with me. I walked to the NICU three times on my own just to check on him. Later, the NICU fellow called to say he was struggling to breathe again. They said he was tachypneic, showing signs of cyanosis, especially during feedings when his oxygen would drop. His oxygen levels were once again increased and a CPAP was the next step.

On day three, I was discharged, and we moved into the Children’s House nearby. I was so grateful to be close to him. I spent 90% of my time in the NICU, went “home” for a few hours to sleep, and returned before sunrise. The Children’s House became a lifeline. It may not sound like a long time but 9 days was enough for us!

Surgery and recovery

After what felt like forever, we finally brought JJ home from Johns Hopkins. At five months old, he returned for surgery with Dr. Kunisaki. After seven long hours, he told us that everything had gone really well. Within an hour, JJ began to stir, clearly uncomfortable. The nurses thought he might be hungry, but nursing didn’t help. I sang to him, held his hand, pressed my face to his, but nothing eased his pain. After six hours of screaming and rising vitals, the pain team stepped in. He was given a morphine drip and other medications and remained semi-sedated for almost two days.

On day three, his chest tube was removed, which started to improve his mood. He still didn’t want to eat, but I was finally allowed to hold him again. I didn’t let go. That night, his X-ray showed atelectasis (a partial lung collapse), which meant another night in the hospital. Thankfully, the next X-ray showed no changes, and by day five, we left Johns Hopkins and traveled back home.

Nothing prepares you for how your heart expands and aches through every phase of new parenthood. It’s a privilege to watch this tiny human grow, discover, and become himself. Our little man is the most perfect, handsome boy.

I went back and forth about sharing our story, but I realized it might help others who are struggling. Years from now, this will just be a story we tell; a story of worry, long nights, and impossible love. Of learning strength we didn’t know we had.

JJ is two years old now and thriving. He’s our wild, bright, old-souled boy.

If you have been affected by miscarriage, pregnancy loss or baby loss, support is available.

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